Coming Of Age With A Disability:

The Path To The Future Is Difficult And Uncertain

By Nancy K. Crevier

(As part of an ongoing series on special education, this report looks at transitioning into the teen and young adult years for children with disabilities. Names have been changed to protect the privacy of individuals in the story.)

“I can tell you exactly why Rebecca has thrived,” said Bruce Woods, pointing to his wife, Mia. “Because of her. Mia has always stressed to Rebecca that everyone has strengths. She told her that everyone has things they are good at, and things they are not so good at. Rebecca has always internalized that,” he said. “Mia is an incredible mother,” added Mr Woods. “Anytime anything comes up that has a chance of value to Rebecca, she is on it,” he said.

Rebecca is the 24-year-old daughter of Mia Woods, and step-daughter of Bruce Woods. She was born with multiple mental and physical handicaps, including a hypothalamic disorder that affects her hormone levels, balance and coordination issues, visual perception problems, and a very low metabolism that has led to what her parents consider one of her greatest disabilities to overcome: obesity. Rebecca’s overall IQ is 68 (normal falls between 90 and 110), but her verbalization IQ is 83.

“So Rebecca is really high functioning, and reading and writing are her strengths,” said Ms Woods.

Since her daughter was able to toddle, Ms Woods has made a point of encouraging her to join in play and activities with typical children. “Inclusion has been wonderful for Rebecca. She is very outgoing, and has an amazing sense of self and self-confidence. Inclusion made the world of difference for her,” stressed Ms Woods.

Rebecca was active in soccer for many years, and was a valued member of her teams, said the Woods. She was a member of a local Girl Scout troop from second grade on, until the troop dissolved when the girls were sophomores in high school. Mia and Rebecca belonged to a mother-daughter book group for many years, and the Woods enrolled her in swim lessons. Not only did Rebecca benefit from the mainstreaming, said Ms Woods, but the other children did, as well. “The other kids learned to accept her, and I think, even admire that things she would try. Especially in Girl Scouts,” she said, “I think it was good for the other kids to have Rebecca in the troop.”

“Everything with Rebecca takes five times longer, though,” said Mr Woods. “So she was in the same level swim class for a long time, but those kinds of things don’t bother her,” he said. “She loved the social interaction.”

Her mental disabilities cause Rebecca to miss many social cues, and that has worked out as a blessing in some instances, said the Woods. “She doesn’t pick up on a lot of things, even if someone makes a rude comment,” Mr Woods said. “She might acknowledge that what she heard hurts, but she doesn’t dwell on it. Day to day living for a disabled person takes a lot of energy,” he explained. “She doesn’t expend energy where she doesn’t have to, including worrying about thoughtless remarks,” he said.

Elementary school was particularly a pleasant time for Rebecca, said the Woods. “Elementary school is heterogeneous, and all the kids are mixed up. She had girls there that were top of the class that she saw every day, and were friends of hers. In middle school, they start getting grouped by ability. So the kids she had seen all the time in grade school were not in her classes anymore. Then the rotations might mix up the clusters a little, but she still wouldn’t see those girls, or during lunch, because of the two lunch shifts. It was hard for her not to see those longtime friends who were really good students and not with her in middle school,” Ms Woods said.

Homework was much more challenging for Rebecca in middle school, too, they said. Luckily, a resource teacher, Charlie Budd, helped the special education students ease through the work and social transitions at middle school “He was the best thing that happened to Rebecca in middle school,” said Mr Woods.

Her circle of friends evolved to include other special needs children, some friendships which she continues to this day.

High school was a more difficult transition. “She was starting to feel very lonely and isolated. She wasn’t able to take most of the courses, and a lot of the kids in the special education classes were very needy compared to her,” said Mr Woods, “or they were there because they were behavior problems. Rebecca didn’t fit in with many of them.”

Because Rebecca was one of only a few students who did his or her homework, listened to the teachers, took notes, and worked hard, she was often used as a role model for the others. For many young people, this would be a source of pride, but Rebecca found it embarrassing. “She is a humble person, so she didn’t like it,” Mr Woods said. In the special education classes, Rebecca no longer had role models for herself. “She had always learned from her peers, the really top notch kids,” said Mr Woods.

At this point, Rebecca’s self-confidence and happy nature began to falter. The Woods put her into counseling for a period of time.

“The best classes for her in high school were the ones that blended the special education and typical kids. That was great,” Ms Woods said. Eventually, Rebecca bonded with a group of special education students that were more like her, and would socialize with them.

She was aware of the blossoming romances of her middle school and high school peers, said Ms Woods, but was not anxious to become involved. She attended school dances, and had many male friends. “She always got along better with the guys. She’s not a girly girl, and that set her apart from the girls of that age, too,” said Ms Woods.

Playing To Strengths

Through it all, the Woods continued to stress Rebecca’s strengths, and help her achieve what she could. “Rebecca gradually realized on her own, her differences,” said Ms Woods. “We never sat her down and said, ‘You’re mentally retarded. You can do this, but you can’t do that.’” Supporting Rebecca’s dreams even included driving lessons, although the Woods doubted she would ever drive.

When one of Rebecca’s special education friends signed up for the driver’s education course, they let Rebecca do so, as well. “She did fine on the written course. She took lots of notes and studied hard,” said Ms Woods, but after just a few times behind the wheel, she stopped pressuring her parents for lessons. The Bureau of Rehabilitation Services had paid for a driving evaluation along the way, and it showed that Rebecca’s reflexes were slow. “We knew that. She would just freeze in a situation that required a quick response. I think she was really scared,” said Mr Woods.

The issue of driving surfaced again, though, when her younger brother, Kyle, got his license. “That really depressed her, and was a huge thing,” said Ms Woods. It was one of many contentious issues between the siblings. “Kyle had a lot of anger that he didn’t express, because Rebecca got so much attention. His behavior suggested to us that he was embarrassed by his sister’s disabilities, and it was hard for us to deal with that reaction,” said Mr Woods. “I finally told him, ‘I don’t know what you think, but your behavior makes it look like you don’t even like her. But she is your sister, she does have disabilities, and you need to be caring,’” Mr Woods said.

Other milestones were a bit easier for Rebecca. When all of her normal peers were preparing for high school graduation and college, she did not feel left out. She knew that she was going to WestConn for the Western Connection program. The two-year program allows the participants to audit one class per semester, and offers job placement and social activities. “That was the happiest time of her life, I think,” said Ms Woods. After the program ended, things got rough for her.

She was taking classes at Naugatuck Community College, but the organized social piece of WestConn was gone. She was able, through funding by the Department of Disability Services (DDS) to hire a driver to take her to school and back, but other transportation, although she used the SweetHART bus, was a problem. The Woods still found themselves driving her places, or she would be frustrated by her lack of mobility.

By now, though, the greatest disability Rebecca needed to overcome was her obesity. The Woods had tried every diet, food behavior techniques, exercise, and nutritional expert that they could find, to no avail. At one point, Rebecca even underwent hypnosis to help her avoid salty foods. It did not help, but finding humor in the situation, Ms Woods said, “I sat in on the session. I didn’t touch a potato chip for five years!”

Rebecca realizes that her obesity is preventing her from moving on. She is unable to get a job, and daily activities are difficult. She feels shame, and guilty all the time because of her weight, said the Woods. She sees her peers moving on — graduating from college, pursuing careers, and getting married, and she wants that for herself. As comfortable as it is living at home, she longs for independence.

“Rebecca has symptoms similar to the genetic disposition Prader-Willi syndrome,” explained Ms Woods. It includes a compulsive appetite and a low metabolism. While testing so far for Prader-Willi has been negative, more testing continues. In the meantime, it is obvious to the Woods that she has most of the symptoms that indicate Prader-Willi, and they must be addressed.

Planning The Future

“We have always talked about Rebecca living independently,” said Mr Woods. “But for the last four or five years, I’ve had a lot of questions as to whether Rebecca will ever be able to be independent or not. We are getting older, though, and frankly, tired,” he said. “Like any parent, I have asked myself if I’m doing enough. I wonder if we have gone too far, or not gone far enough for Rebecca. One thing we do know is, we won’t always be around, so we have been working toward finding somewhere that will work for Rebecca,” he said.

A regular group home is not the answer, because of her eating disability. “People with Prader-Willi need a food secure environment. They need to know what and how much they’ll eat, and food cannot be available to them. They cannot have money for buying food. As Rebecca gets older, we realize that she does not have control over this, and we can’t be the food police anymore,” said Mr Woods. “People don’t look at obesity as a disability. They think she is just lazy or wants to be this big.”

“If you haven’t lived with someone with this kind of disorder, you really can’t understand,” added Ms Woods.

The Woods have located a special living arrangement on Cape Cod. Latham Centers in Brewster has been addressing the needs of people with Prader-Willi since 1984. It is a lifelong residency program, and as individuals prove they can be in a normalized situation without “food seeking,” they are assisted in getting jobs within the community. “It’s a total life program,” said Mr Woods. “When someone with Prader-Willi no longer has to obsess over food, it opens up their energy to do all the things they want to do,” he said. Plus, weight loss will make Rebecca a much healthier young woman.

Initially reluctant, because she thought Cape Cod was too far from home, the Woods convinced Rebecca to visit Latham Centers. “She loves to do anything that we can equate to ‘normal’ kids, so we likened it to when we visited colleges with Kyle,” said Ms Woods. At Latham Centers, Rebecca met three or four people who were just like her, something that had never happened to her before. “She was so excited. She told us, ‘This is what I need.’”

A residential home like Latham Centers is very expensive, though, so until the Woods can convince DDS that this is an out-of-state service that cannot be met in-state, and get assistance with paying for it, they are unable to register Rebecca. The problem is, a similar living arrangement has recently opened in Connecticut.

“The Connecticut facility is too new. All of the programs aren’t in place, and there are only two residents. Rebecca doesn’t have time for them to piece it all together,” said Mr Woods.

“This last calendar year, we saw that we need to make changes. The Latham Centers has given us hope for a more concrete future,” he said.

Rebecca has goals. She wants to complete her college courses, and hopes for a career in social services. The Woods have no doubt that her friendly personality and strong work ethic, coupled with her social and academic successes, would make her a valued employee. “If Rebecca gets her weight under control, she will be fine. She’ll be an asset wherever she works,” said Ms Woods.

Success through the Latham Centers program is a milestone that could ease the loss Ms Woods feels over watching Rebecca’s typical friends easily hopscotch from one life event to the next. “If she was in a place where she was safe, and happy, I’d be fine,” she said. “But she’s not in that place right now, and that’s the hardest part for me.”